Navigating impasses in Bioethics: End of Life, Disability and Mental illness

Navigating impasses in Bioethics: End of Life, Disability and Mental illness

By Caterina Milo

The UNESCO Chair in Bioethics and Human Rights is glad to have supported the publication of the Journal of Disability & Religion Special Issue (3) 2018 on ‘Navigating impasses in Bioethics: End of Life, Disability and Mental illness’.

Fr. Gonzalo Miranda

This special issue followed the interdisciplinary research workshop “Navigating Impasses in Bioethics: End of Life, Disability, and Mental Illness,” (freely available online until May 31, 2019) held on December 8, 2017, at the Von Hügel Institute for Critical Catholic Inquiry (VHI) at St Edmund’s College, University of Cambridge, that was attended also by our director Alberto Garcia and Fr. Gonzalo Miranda, dean of the Faculty of Bioethics at Pontifical Ateneum Regina Apostolorum in Rome.

Alberto Garcia

The core topic analyzed through the articles is euthanasia. This is both a timely and highly debated topic in Europe and worldwide, as it is shown by the ongoing judicial and parliamentary debate concerning Assisted suicide in UK, the 2018-judgement of the Italian Constitutional Court and the push towards a regulation on assisted suicide in Italy, and the 2017-legalization of Assisted dying in Canada.

The articles included in this issue provide a multifaceted exploration of this topic, merging both legal and ethical reflections. They ultimately address how the legalization of euthanasia is influenced by ethical concepts like quality of life, dignity, autonomy, agency, consent and what practical consequences this brings forth.

The first two articles, edited by Schiltz and Campos, focuses on the practical implications of the legalization of physician-assisted suicide in the USA and Canada. Schiltz claims that the legalization of physician assisted suicide for people with disabilities amounts to a form of discrimination. More fundamentally this regulation is in stark contrast with the American disability Act in so far as it sends a clear discriminatory message towards disabled people. ‘The statement that is made by such laws is that life with a disability is not worth living; by extension, persons living with disabilities are not worthy of life’ (Schiltz, 242-243). Thana de Campos, focuses on the Canadian legislation exploring the implication of the inclusion of mental health patients. She challenges the mainstream understanding of human dignity portrayed by this legislation, claiming that it rests on a mere-homo economicus view, that is to say one that focuses on a pure quality of life understanding. She claims instead that a personalist view of dignity should be purported and hence the intrinsic value of every human being supported.

The second group of articles further enriches the reflection providing personal stories concerning disability. McKearny, asks the burning question of ‘how much power should someone have over the life of the most vulnerable?’ This question arises from his personal experience at L’ Arche, a religious community that offers support to people with cognitive disabilities. His reflections rests on a critique of autonomy, care and responsibility that have informed the idea of agency and the euthanasia debate. Fistein, discusses the results of the Future Care study, an empirical research run by the Department of Primary Care and Public Health of the University of Cambridge. When it comes to patients with progressive neurological diseases, whose cognitive and physical functions are often strongly impaired, Fistein claims that it is key that the care-planning ponders not only norms of effectiveness and quality of life, but also moral principles of life-preservation. This is surely not a straightforward task: advantages and disadvantages should properly evaluated in the light of the patients’ right to treatment and their quality of life. David Jones, reflects on the tie between assisted dying and suicide. Through a reflection on two examples of suicide by disabled people, one unassisted and one assisted, it highlights that there are some points of dissimilarity, but also some of similarity. The aim of his reflection is to stress the danger of suicide, whether assisted or unassisted, for those who would be eligible for euthanasia in the low countries or assisted suicide in Switzerland.

The third group of articles expands the reflection provided through philosophical and theological accounts of life and death for people with disabilities. Ripamonti, reflects on the concept of autonomy in dying as the concept generally behind the euthanasia regulation. She claims this concept to be flawed because it excludes all those who live in a condition of dependency. To be un-autonomous ultimately does not mean to loose one’s own personal dignity. The lack of control over one’s life circumstances does not imply the lack of value or life’s ultimate meaning. Brock, reflects on the role of economic rationality in shaping the idea that some lives are not worth living, like those of people with disabilities. The life of a disabled is in a condition of ‘debt’ something that is rejected by nowadays western societies. This perception is also in stark contrast with early Christian ideas of human solidarity: it is an ethics of mutual support that we should expect, rather than the legalization of euthanasia. The final article, edited by Elliot, provides a theological account. He challenges the anthropological idea of ‘despair’ and proposes the theological hope as a way forward. In this view disabled patients are themselves made at the image of God: they are the living image of Christ, bearing his sufferings but also, in hope, His resurrection.

This special issue provides a unique account of one of the most debated topic: euthanasia. Its uniqueness stands on the variety of contributors, from legal, to theological, philosophical, medical, on the topic of euthanasia. It indeed includes a wide range of  timely and thought-provoking articles that will shape the broad academic and non-academic debate concerning end-of life issues, especially euthanasia and disability.

“Man-machine interaction: the application in the disability’s field”  Masterclass in Robo-ethics, 4th lesson  Interdisciplinary Resarch Group on Neurobioethics, 25 January 2019

“Man-machine interaction: the application in the disability’s field” Masterclass in Robo-ethics, 4th lesson Interdisciplinary Resarch Group on Neurobioethics, 25 January 2019

By Giulia Bovassi

Encouraged by the words that the Holy Father, in Humana Communitas, dedicated in memory of the twenty-fifth anniversary of the Pontifical Academy for Life, also accompanied by the operative reality of Dr. Federica Ebau, we are called again in this research session to ask ourselves how to conserve humanity within the context of technical innovation.

Last January 25th, the Interdisciplinary Research Group on Neurobioethics, in cooperation with the UNESCO Chair in Bioethics and Human Rights and the Science and Faith Institute, hosted Federica Ebau, Product Specialist of Progettiamo Autonomia Robotics SRL, in order to reflect on the role of robotics in rehabilitation, a speech – as suggested by Claudio Bonito during his introduction – which could be synthetically defined as a conversation about the responsible use of robotic development. Precisely inasmuch as it is a graft between flesh and artifice, an external habit, robotics cannot disregard proper ethical investigations around the approximation between thinking reality and mechanized reality. An ambivalent combination of euphoria and fear, both settled over the uncomfortable session of the techno-scientific paradox.

Using exactly the term “paradox”, Pope Francis, in the letter mentioned above, presses on the anguish experienced by peoples in the era of scientific excellence. History, indeed the very birth of bioethics, marks the continual warning to tirelessly illuminate the action of the human being, therefore moral action, so that it can act as an indispensable glue between specialized studies and the true good for the “mankind’s care,” where the fundamental rights of every member of the human species, the dignity recognized to them and the responsibility towards the common good are contained. Transversely the commitment of international organizations such as the UNESCO Chair in Bioethics and Human Rights, which has the specific purpose of effectively feeding the solidity of common roots, in order to realize what the Holy Father has also recalled: a “global bioethics”.

Clinical practices, such as the professional experience presented by Ebau, concretize the proposed theorization. Robotics – the preferential research field of the speaker – is not only decisive for national and international territories, but rather a real investment material of the contemporary era, and there are three areas in which robotics will be massively involved: the military one, the hospital one and the industrial one. In the rehabilitation context, the patient – generally a paraplegic person – experiences a complex clinical process compared to able-bodied people, but also because these patients lead a life that is mostly active, domestic, athletic or lively working with an enormous therapeutic and rehabilitative need to combat sedentariness. The previous testimony of Carmine had already made us realize the importance of enormous accomplishments produced by self-esteem, willpower and fighting spirit; in the same way Ebau confirms the positive change in her patients and the centrality, in comparison with the machine, of adopting the existential perspective. “A boy in a wheelchair, with no sensitivity from the chest down, feels nothing. His perception of space is very different from ours; he feels like a tightrope walker hanging in the middle of nowhere”: for this reason the impact with the exoskeleton and therefore the adventure towards a change of dimension, from the bottom to the top, is a delicate point in the relational experience and, in this sense, has been interesting to hear the technique put in place by the doctor, proposing to the patient his own image through a mirror, a method of joining two images of the same person.

Once again we are witnesses that the real conflict between artifice and human being refers to personal identity, to the question about the self.

“Robo-ethics: robotics, rehabilitation, personalization and re-education of body and mind” Masterclass in Robo-ethics, 3rd lesson  Interdisciplinary Research Group on Neurobioethics, 14 December 2018

“Robo-ethics: robotics, rehabilitation, personalization and re-education of body and mind” Masterclass in Robo-ethics, 3rd lesson Interdisciplinary Research Group on Neurobioethics, 14 December 2018

By Giulia Bovassi

Addressing the issue of robotics is now a need that cannot be postponed, particularly in recent times, since a rapid acceleration forced this close face-to-face between robotics and human reality. The technical examination offered by the experts conceptually prepares for the personal testimony of Carmine Consalvi.

This third afternoon, dedicated to the interaction between different forms of specialized knowledge, brought the theory into praxis, not only through the interventions of Giovanni Morone and his colleague, Marco Iosa, but also through the autobiographical note of the young Carmine Consalvi, 31 years, whose history is linked to the exoskeleton application in rehabilitation. As a patient, Carmine brought an important fact back to the heart of the research so far conducted, easily to get lost when you enter conceptually into the bioethical issues, namely the human being. Claudio Bonito, member of the GdN and coordinator of the research subgroup on “Posthumanism”, introducing this last intervention as the conclusion of the afternoon session, contrasted the “to do” with the “to act”: the action framework is working on new moving realities. That Vitruvian man, from whom humanism took inspiration for years, is challenged by the external act, a product of man, the artifice of the creative mind, which runs the risk of reductively exhausting himself in himself, concealing the ultimate destination of a “to do” that makes itself “to act.” Empathy takes over. Carmine shared the following: the invention rushed in my aid by physically, psychologically and humanly giving me new forces, driven by the determination arose in succeeding ex novo to relate myself with someone looking into his eyes, which, backward, the view of the wheelchair, from the bottom towards the other, failed. Six years ago, the road accident: a trauma that drastically influenced his life and his habits causing him the lack of voluntary residual movements, removing the complete control of the trunk; aspects to which Carmine felt called in a physical and existential rehabilitative response. After learning about the exoskeleton, he decided to try it, firstly to test whether innovation was ready for him. The patient’s feedback lies on the adaptability of the robot to its psychological, as well as physical, predisposition. The device is applied when you let it; in this sense, Carmine spoke of a subjective, non-standardized reaction to this type of technology, where a non-marginal role in his case was played by constancy and willpower.

A closure which is in line with the opening of the seminar conducted by Morone, “The right robot for the right person at the right time: state of the art, future perspectives on the use of robots in neuro-rehabilitation,” which accompanied the reflection through the work done at the IRCCS Santa Lucia, where they deal with new technologies used in neuro-rehabilitation. Complex applications under multiple points of view, from the costs to the much longer rehabilitation times, up to the same effectiveness; factors assumed by a part of experts and researchers with extreme skepticism and, by the other part, with excessive optimism, two ways which made the relationship between therapy and technology not always linear – as explained by the professor. Then the fundamental question reiterated by. Morone, pervasive in all the neuro-rehabilitative practice, is: “in the moment when we have to push the neuro-plastic capacity to its maximum for recovery, functionality and ability, during the hospitalization (especially in patients suffering from stroke), did it provide a sufficient stimulus for the patients to their recover?” Here then returns the example embodied by Carmine himself, although with different clinical situations: to know which patients can benefit from therapeutic robotics, so from a generic question “is this robot generally effective?” to “for whom this robot is effective?” We need to change the question because the focus has changed. Within their research group, a team of specialists during about ten years of observation, noted how the resistance was massively sedimented in people psychologically proven by states of anxiety or stress, emotionally disturbed by the robotic element. By looking for a propulsive force in brain plasticity we learn first that there cannot be “any patient” for “any robot,” so that the neuro-rehabilitation principles can be facilitated or increased thanks to the robotic supplement.

Marco Iosa spoke on “The ethics of rehabilitation robots. The three laws of neuro-robotics”, with clear reference to I. Asimov, as the Three Laws of Robotics and to its explanatory filmography, such as “I, Robot.” Robots are designed for three types of work: the dirty one, the boring one and the dangerous one. In the case of rehabilitation or, generically, in medicine, there is a need for adaptability with what the patient wants to do or feels he can do, following a procedure that is very different from what is normally followed by pharmacovigilance. Thus, we could outline three modern laws of robotics in the health field: 

1) a robot for neuro-rehabilitation may not injure a patient or allow a patient to come to harm;

2) a robot must obey the orders given it by the therapists, provided that such orders do not contravene the First Law;

3) a robot must adapt its functioning to the patient’s abilities in a transparent way as long as this does not conflict with the First or Second Laws.

This structure is affected by the difficulty of the “Paradox of efficacy”, i.e. how to benefit from a proven effectiveness-risk criterion. The resolution is obtained changing the request, that is asking for whom it is effective (as already said, the anxious subject, if called to choose between robot and physiotherapist, opts for the latter). The professor noted, “the robot is like the invention of the machine; it answers the question: “what can you not do for the patient?” We thus tread on the limit not only between effectiveness and risk, but between therapeutic and enhancement, highlighted by the performance accomplished with cerebral, electrical or magnetic stimulation. What purpose and what distinction is made between what is therapeutically beneficial and what an enhancement? What is the distinction between treatments to provide for learning or athletic difficulties, emotional or traumatic management in the military field, etc.? Countless examples for a single ethical macro-question: is all that is technically possible also morally licit?

Roboethics: Humans, Machines and Health

Roboethics: Humans, Machines and Health

Roboethics: Humans, Machines and Health is the title of the Workshop that will be on 25-26 February 2019 during the Assembly of the Pontifical Academy for Life.

The goal of the Workshop is to provide updates on the characteristics of the technologies in the field of robotics: namely, through those who work on the ground, identify and shape the questions rising in the field from the anthropological and ethical point of view and propose some ethical criteria and possibly some recommendations, keeping alive the attention to the global dimension of the theme. First session (Monday 25, afternoon) will focus on state-of-the-art technologies and different approaches to robotics’ research and development. Second session (Tuesday 26, morning) will explore socio-anthropological implications, i.e., how robotics changes the ways of knowing and understanding the world, perceiving relationships, and understanding the body and social coexistence. Third session (Tuesday 26, afternoon) will address the ethical implications of robotics in the health sector.

Please note that this Workshop will be followed by the 2020 Assembly on Artificial Intelligence. The fields of robotics and artificial intelligence are distinct, but closely related. They both contain so much information and so many anthropological and ethical questions in themselves that we are dedicating two assemblies to these subjects. We hope that, by having two different assemblies dedicated to two different aspects of the larger field of robotic technologies in general, we can address the opportunities and challenges of these connected technologies in greater depth.


Germany looks into ultrasound age tests on unaccompanied minor refugees

Germany looks into ultrasound age tests on unaccompanied minor refugees

Calls for mandatory X-ray age tests on unaccompanied minor refugees were rejected last year by German doctors. As an alternative, the Health Ministry is now launching a €1-million study into ultrasound testing.

Young refugees walk in a hallway, backs to the camera
Age can have a huge implication on the future prospects of an asylum-seeker in Germany. In principle, unaccompanied minors — under the age of 18 and without family — cannot be deported. Upon their arrival in Germany, unaccompanied minors also have the right togo to school or start a training course immediately.

Debate in Germany over mandatory age checks on unaccompanied minor refugees has drifted on and off the agenda for months. In practice, tests to determine a refugee’s age currently differ from state to state. But discussions were brought to a halt last year when the German Medical Association (BÄK) rejected a proposal by the Health Ministry to introduce mandatory age checks using X-ray on ethical and medical grounds, calling it “an interference in their human welfare.”

Now, in the search for an alternative, German Health Minister Jens Spahn is pumping €1 million euros ($1.1 million) into a study to find out if ultrasound can be used to determine people’s age. A small, portable device, not much larger than a shoebox, has been developed by the Fraunhofer Institute.

“I can understand why doctors are reluctant to use X-rays when determining the age of young migrants,” said Spahn. “But we need to determine age. Because this has a bearing on the asylum process and — when there is doubt — on legal proceedings. That’s why we have to find a way to make this as minimally invasive as possible.”

Results of the €1-million study are due by the end of 2020.

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